How To Understand Disability Support In Australia

Transcription

1 Bulletin 118 July 2013 Disability support services Services provided under the National Disability Agreement Summary bulletin 118 Many people with disability are able to live independently and participate in society without assistance, or with the help of informal carers. However, others require formal specialist disability services to study, work, interact with the community or carry out everyday activities. This bulletin presents data collected in the Disability Services National Minimum Data Set (DS NMDS) on the number and types of disability support services provided under the National Disability Agreement (NDA), including community support (received by 43% of service users), employment (42%), community access (20%), accommodation support (13%) and respite (12%). This information is important as the disability policy and service delivery environment continues to evolve, for example, with the introduction of DisabilityCare Australia (formerly the National Disability Insurance Scheme). How much was spent on disability support services? In , expenditure on disability support services was $6.9 billion, of which $6.4 billion was allocated for service delivery. Expenditure on disability support services, adjusted for inflation, has increased in recent years by 10% between and , and by 28% since How has service use changed? In , 317,616 people used disability support services, an increase of 29% from Growth in the use of services has slowed since , with a 1% increase between and , compared with 7% between and This was reflected in the rate of service use which remained steady between and , at an estimated 1 in 70 people in the general Australian population, after increasing each year up to that point (from 1 in 85 in ). There were decreases in the use of some service types between and , notably accommodation support and community support services, both of which decreased by around 3%. In contrast, the use of community access and employment services both increased over that time (by 5% and 4% respectively).

2 Disability support services: services provided under the National Disability Agreement What are the support needs of service users? The most commonly-reported disability groups continue to be intellectual (33%), physical (32%) and psychiatric (28%), though the proportion of service users with an intellectual disability has decreased over the 5 years to Most service users needed some assistance in the activities of daily living (52%), independent living (61%) and in work, education and community living (57%). The number of service users with an informal carer increased by 24% between (108,091) and (133,841), and by 5% between (127,777) and In , around 1 in 4 service users (26%) used more than one type of service. Contents Summary...1 How much was spent on disability support services?...1 How has service use changed?...1 What are the support needs of service users? What are disability support services? Who provides disability support services? How much was spent on disability support services? How many people used disability support services? Who used disability support services? Age and sex Aboriginal and Torres Strait Islander people Country of birth Living arrangement Employment and income Disability group In what life areas was assistance needed? What were the most common services used? Users of multiple services Informal care How many service users had an informal carer? Who provided informal care? Profile of a service user by broad primary disability group Acknowledgments Abbreviations Symbols References Related publications

3 Bulletin XX September What are disability support services? Under the National Disability Agreement (NDA), Australian governments fund a range of disability support services which aim to improve the lives of people with disability, and of their carers, and ensure that both have the opportunity to participate in the community. Data on these services are collected in the DS NMDS. Further information on the DS NMDS is included in the online appendix accompanying this bulletin (see AIHW 2013a). This appendix also contains additional tables (including selected breakdowns of data by state and territory) and technical information (such as a data quality statement and glossary of terms). Services available under the NDA include 34 individual service types which can be grouped into the following service groups: accommodation support services that provide accommodation to people with disability and services that provide support to enable a person with disability to remain in their existing accommodation or to move to more suitable or appropriate accommodation community support services that provide the support needed for a person with disability to live in a non-institutional setting community access services designed to provide opportunities for people with disability to gain and use their abilities to enjoy their full potential for social independence respite services that provide a short-term and time-limited break for families and other voluntary care-givers of people with disability, to assist in supporting and maintaining the primary care-giving relationship, while providing a positive experience for the person with disability employment services that provide employment assistance to people with disability in obtaining and/or retaining paid employment in the open labour market (open employment) or services that provide employment opportunities and assistance to people with disability to work in specialised and supported work environments (supported employment) advocacy, information, alternative forms of communication other support services (see also AIHW 2013a). Under the NDA, the Australian Government has responsibility for the provision of employment services for people with disability and the states and territories have responsibility for the provision of other services. Service-user data are not collected for the service groups of advocacy, information, alternative forms of communication and other support. This bulletin describes just one part of a broader service system which assists people with disability. Many people with disability receive support through other government programs, such as the former Home and Community Care (HACC) program, in addition to mainstream services including health, education and transport. 3

4 Disability support services: services provided under the National Disability Agreement Who provides disability support services? Agencies that deliver disability support services under the NDA collect data against each service type outlet they operate (see AIHW 2013a: Glossary). In , there were 2,277 agencies managing 14,306 service type outlets (AIHW 2013a: Appendix B, Table B4). In : most agencies were state/territory-funded (73%); the remaining 27% were Australian Government-funded, reflecting the responsibilities outlined in the NDA (AIHW 2013a: Appendix B, Table B3) the majority (80%) of service type outlets were in the non-government sector and most of these were income tax exempt charities (69% of all service type outlets) (Table 1.1). For further information on agencies and service type outlets, see AIHW 2013a: Appendix B, tables B2 B17. Table 1.1: Number of disability support service type outlets, by service group and agency sector, Government Non-government Income Service group territory Local Sub-total (charity) tax exempt Sub-total Total Australian/ state/ tax exempt Nonincome Accommodation support 1, ,589 3, ,267 5,856 Community support ,021 1,710 Community access , ,887 3,071 Respite (a) , ,291 1,497 Employment (b) , ,354 1,402 Advocacy, information, alternative forms of communication Other support Total 2, ,846 9,856 1,604 11,460 14,306 (a) Information on Australian Government-funded respite services is not included in the table. (b) Includes only Australian Government-funded employment services. 1.2 How much was spent on disability support services? In , expenditure on disability support services was $6.9 billion, of which $6.4 billion was allocated for service delivery (Table 1.2 and AIHW 2013a: Appendix B, Table B1). Of this, 86% was contributed by the states and territories and 14% by the Australian Government. For a breakdown of expenditure data by jurisdiction, see AIHW 2013a: Appendix B, Table B1. Expenditure on disability support services in constant dollars (that is, adjusted for inflation or deflation over years) has increased by 10% between and and by 28% since This is in contrast to a 2% increase between and (Table 1.2). 4

5 Bulletin XX September 2011 Between and : the largest increases in expenditure were in accommodation support (9%), employment (8%), and community access (6%) services average expenditure per service user generally increased, largely due to increases in the funding for disability support services and a steadying of the number of service users (Table 1.2 and Figure 2.1). Table 1.2: Expenditure in constant dollars on disability support services, by service group, to Percentage change Service group $ million (constant prices in dollars) to to Accommodation support 2, , , , , Community support , Community access Respite Employment Advocacy, information, alternative forms of communication Other support Subtotal 4, , , , , Administration Capital grants to non-government providers Total 5, , , , , Expenditure per service user ( dollars) Accommodation support 83,552 81,747 84,363 81,451 89, Community support 6,145 6,974 6,966 7,029 7, Community access 14,235 13,337 13,917 13,147 12, Respite 10,901 11,361 11,678 11,161 11, Employment 6,617 5,397 5,688 5,407 5, Total 20,508 19,012 19,262 18,616 19, Notes 1. Excludes expenditure on, and service users of, specialist psychiatric disability services. 2. Expenditure data includes actual payroll tax for New South Wales (for ), Victoria (in part, for ), South Australia (in part to ), Tasmania and the Northern Territory. 3. Expenditure figures may not add to total because of rounding. 4. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 5. Total service users may not be the sum of service group components because individuals may have used more than one service group over the 12-month period. Sources: DS NMDS ; SCRGSP 2013: tables 14A.4 and 14A.8. 5

6 Disability support services: services provided under the National Disability Agreement How many people used disability support services? In , 317,616 people used disability support services (Figure 2.1). This equated to an estimated 1 in 70 people in the general Australian population (or 14 per 1,000). Number 350, , , , , ,000 50,000 0 Number of service users Per 1,000 population Service users per 1,000 population , , , , , Year Source: AIHW 2013a: Appendix B, Table B20 and ABS 2012a. Figure 2.1: Growth in service use, number of service users and number per 1,000 general Australian population, to In general, both the number of service users and the rate of service use increased between and , however, both slowed in the last year. The number of service users increased by 29% in these 5 years (from 246,281 to 317,616), and the rate of service use increased from an estimated 1 in 85 to 1 in 70 in the general Australian population (or from 12 per 1,000 to 14 per 1,000). Between and , the number of services users increased by 1% (in contrast to a 7% increase between and ) and the rate of service use in the general Australian population did not change (at 14 per 1,000 people in the general Australian population in both years). In , an estimated 203,371 service users (64%) used state- or territory- delivered services, such as accommodation support, community support, community access and respite services, and 132,949 (42%) used Australian Government-delivered employment services (Table 5.1). For further information on service users, see the following sections and AIHW 2013a: Appendix B, tables B18 B80. 6

7 Bulletin XX September Who used disability support services? 3.1 Age and sex The average (mean) age of service users overall was 34 (Table 3.1). The median age was similar, at 33 years, indicating that there were few outlying ages which were very high or very low compared to the rest (AIHW 2013a: Appendix B, Table B18). Most service users (59%) were male (tables 3.1 and 3.2). They were generally slightly younger with a mean age of 32 in compared with female service users whose mean age was 37. This was influenced by the relatively high number of young male service users with an intellectual or learning disability (see Section 7). The overall sex and age distribution of service users has remained relatively steady over time (Table 3.1 and AIHW 2013a: Appendix B, Table B20). For further information on service users by age and sex, see Section 7 and AIHW 2013a: Appendix B, tables B18, B20 22, B24, B33, B35, B36, B40, B44 46, and B61 B63. Table 3.1: Age and sex of service users, to Sex Mean age (years) Per cent Mean age (years) Per cent Mean age (years) Per cent Mean age (years) Per cent Mean age (years) Per cent Male Female All service users (a) (a) All service users includes service users for whom sex was not stated/not collected for to and for whom age and sex was not stated/ not collected for Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). Table 3.2: Service users, by sex and age group, Sex Total Number Male 147,247 31,899 8, ,537 Female 91,226 28,778 9, ,869 Not stated/not collected Total 238,637 60,714 18, ,616 Per cent Male Female Not stated/not collected Total Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 7

8 Disability support services: services provided under the National Disability Agreement Aboriginal and Torres Strait Islander people In , 6% of service users were Aboriginal and Torres Strait Islander people, higher than the estimated 3% of Indigenous people in the Australian population (Figure 3.1; ABS 2012a). The proportion of Indigenous service users has increased slightly from 5% in Per cent Non-Indigenous Indigenous Year Source: DS NMDS and Table 3.3. Figure 3.1: Service users by Aboriginal and Torres Strait Islander status, to (per cent) Most Indigenous service users (84%) were aged under 50 (Table 3.3). This was higher than the proportion of non-indigenous service users in this age bracket (75%), reflecting the relatively younger age profile of Indigenous Australians. For further information on service users by Indigenous status, see Section 7 and AIHW 2013a: Appendix B, tables B18, B22 24, B40, B55, B68 and B79. Table 3.3: Service users, by Indigenous status and age group, Aboriginal and/or Torres Strait Islander status Total Number Indigenous 14,150 2, ,937 Non-Indigenous 210,659 55,983 15, ,128 Not stated/not collected 13,828 2,645 2,078 18,551 Total 238,637 60,714 18, ,616 Per cent Indigenous Non-Indigenous Not stated/not collected Total Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 3. Not stated/not collected includes both service users accessing only 3.02 services (recreation/holiday programs) for whom Indigenous data were not collected, and other service users with no response. See the separate appendix accompanying this bulletin for more information. 8

9 Bulletin XX September Country of birth The majority of service users (87%) were born in Australia (Table 3.4). Thirteen percent were born overseas 9% in a predominantly non-english speaking country (English Proficiency Group (EPG) 2 4 countries), and 4% in a predominantly English-speaking country (EPG 1 countries). The proportion of Australian-born service users was higher than the proportion of those who were Australian-born in the overall population (73%) (ABS 2012b). The proportions of Australian-born and overseas-born service users have remained relatively steady over time, with a slight decrease in Australian-born service users and a slight increase in those born in a predominantly non-english-speaking country (EPG 2 4 countries). For further information on service users by country of birth, see Section 7 and AIHW 2013a: Appendix B, tables B18, B25, B26 and B40. Table 3.4: Service users, by country of birth (English Proficiency Group countries), to Australia (a) Born overseas, EPG 1 Born overseas, EPG 2 4 Number Not stated/ not collected ,779 9,891 17,867 14, , ,050 11,390 21,767 18, , ,724 11,940 24,225 16, , ,769 12,539 26,827 17, , ,527 12,810 27,493 18, ,616 Per cent (a) Includes external territories, excludes Norfolk Island. Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). Total 9

10 Disability support services: services provided under the National Disability Agreement Living arrangement Around half (46%) of service users lived with family, 20% lived with others (such as sharing with a friend or a non-related carer) and 15% lived alone. Information was not stated or not collected for 20%. The proportion living with family has declined between (56%) and (46%) (Figure 3.2). Per cent Lives alone Lives with family Lives with others Not stated/not collected Living arrangement Source: Table 3.5. Figure 3.2: Service users, by living arrangement, to The majority (63%) of service users lived in a private residence, 5% lived in a domestic-scale supported living facility (such as a group home), 4% lived in a boarding house or private hotel and 3% lived in a supported accommodation facility (AIHW 2013a: Appendix B, tables B18 and B34). Most of the service users who lived in a domestic-scale supported living facility or in a supported accommodation facility had an intellectual or learning disability (AIHW 2013a: Appendix B, Table B34). For further information on service users by living arrangement and/or residential setting, see AIHW 2013a: Appendix B, tables B18, B22, B31, B34, B35 and B54. 10

11 Bulletin XX September 2011 Table 3.5: Service users, by living arrangement (a), to Lives alone Lives with family Lives with others Number Not stated/ not collected , ,038 46,163 29, , , ,730 63,275 24, , , ,011 79,487 18, , , ,754 70,777 33, , , ,424 62,521 62, ,616 (a) Changed data-collection arrangements for clients of open employment services affected the non-response rates for living arrangement for these clients in It is intended that revised figures incorporating further responses received will be updated in future publications. Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 3.5 Employment and income Close to half (45%) of service users aged were unemployed, 27% were employed and 28% were not in the labour force (Table 3.6). Between and , the proportion of service users who were unemployed increased while the proportion who were employed or who were not in the labour force decreased (Figure 3.3). Total Table 3.6: Service users aged 15 64, by labour force status, to Employed Unemployed Not in the labour force Number Not stated/ not collected (a) ,005 45,977 58,196 15, , ,708 62,297 58,763 20, , ,002 77,351 60,183 19, , ,111 75,027 60,211 23, , ,622 94,773 58,124 27, ,754 (a) Includes service users for whom labour force status information was required but not collected due to the service users age at the time of their last service date. Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). Total 11

12 Disability support services: services provided under the National Disability Agreement Per cent Employed Unemployed Not in the labour force Labour force status Source: Table 3.6. Figure 3.3: Service users, by labour-force status, to The most common source of income of service users aged 16 64, regardless of their labour force status, was the Disability Support Pension (48%), followed by other pension or benefit (12%) (AIHW 2013a: Appendix B, Table B29). Of the service users who received the Disability Support Pension, 30% were employed, 28% were unemployed and 41% were not in the labour force. Over half (59%) of employed service users were also receiving the Disability Support Pension. For further information on service users by main source of income and labour force status, see Section 7 and AIHW 2013a: Appendix B, tables B18, B22, B27 B30 and B Disability group The term disability group defines a broad categorisation of disabilities in terms of underlying health condition, impairment, activity limitations, participation restrictions and environmental factors (AIHW 2013b). Disability group is not a diagnostic grouping, and there is not a one-to-one correspondence between a health condition and a disability group. In the DS NMDS, service users are asked to record their primary disability, that is, the disability that most clearly expresses their experience of disability and which can be considered the one that causes the person the most difficulty in everyday life. (See AIHW 2013a: Glossary). They are also asked about any other types of disability that caused them difficulty (referred to as other significant disability group ). 12

13 Bulletin XX September 2011 Service users with an intellectual disability are the largest group across years. Around a third of service users had an intellectual disability in (29% as a primary disability or 33% when other significant disability is included) (Table 3.7 and Figure 3.4). Other common types of disability are physical disability and psychiatric disability. Table 3.7: Service users, by primary or other significant disability group, Primary disability group Other significant disability group Total Disability group Number Per cent Number Per cent Number Per cent Intellectual/learning 128, , , Intellectual 85, , , Specific learning/add 13, , , Autism 18, , , Developmental delay 10, , , Physical/diverse 79, , , Physical 50, , , Acquired brain injury 10, , , Neurological 18, , , Sensory/speech 30, , , Deaf blind , , Vision 13, , , Hearing 11, , , Speech 3, , , Psychiatric 56, , , Psychiatric 56, , , Total (a) 295, , , (a) Primary disability group was not stated/not collected for 22,435 service users. The total for primary disability group excludes these records, while the total for total disability group includes these records. Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 3. Totals for other significant disability and total disability are not the sum of components because individuals may report multiple types of disability. On average, around two disability groups per service user were reported (AIHW 2013a: Appendix B, Table B32). Service users who reported their primary disability as deaf-blind had the highest average number of disabilities per service user (4.1 disabilities per service user). The prevalence of some primary disabilities has shifted over the five years to (Figure 3.4). In particular, the proportion of service users with an intellectual disability has decreased and the proportion with a psychiatric or physical disability has increased. For further information on service users by disability group, see Section 7 and AIHW 2013a: Appendix B, tables B18, B22, B26, B30, B32 B34, B36, B41, B43, B56 B58, B63 and B68. 13

14 Disability support services: services provided under the National Disability Agreement Per cent Intellectual Specific learning/add Autism Developmental delay Physical Acquired brain injury Neurological Deaf blind Vision Hearing Speech Psychiatric Source: DS NMDS and Table 3.7. Primary disability group Figure 3.4: Service users, by primary disability group, to In what life areas was assistance needed? People with disability may require support to perform activities associated with the three life areas of daily living, living independently and participating in work, education and community life. The level of that support can vary substantially. The DS NMDS includes nine data items to indicate at least some of the functional needs of service users and these can be grouped into the categories of activities of daily living (ADL), activities of independent living (AIL) and activities of work, education and community living (AWEC). (For more information see AIHW 2013a: Glossary). Data about support needs should be interpreted with caution because there were high rates of not stated/not collected responses, particularly in and Because of this, comparisons over time should be made with care. The majority of service users needed some assistance in one or more of three broad life areas. Service users were more likely to need assistance with activities of independent living (AIL) and activities of work, education and community living (AWEC) than with activities of daily living (ADL) (Figure 4.1). (See AIHW 2013a: Appendix B, tables B51 and B52 for a breakdown of the life area groups). 14

15 Bulletin XX September 2011 Per cent ADL AIL AWEC Broad life area Source: AIHW 2013a: Appendix B, Table B52. Figure 4.1: Service users who always or sometimes need assistance, by broad life area, Users of accommodation or respite services were the most likely to always or sometimes need assistance to perform activities in all three broad life areas (Figure 4.2). Users of employment services were the least likely to always need assistance across the three areas. This is consistent with data from previous years. Per cent ADL AIL AWEC Accommodation support Source: AIHW 2013a: Appendix B, Table B53. Community support Community access Service group Respite Employment Figure 4.2: Service users who always or sometimes need assistance, broad life area by service group, For further information on service users and their need for support in a life area, see Section 7 and AIHW 2013a: Appendix B, tables B18, B51 B58 and B80. 15

16 Disability support services: services provided under the National Disability Agreement What were the most common services used? In , community support (43%) and employment services (42%) were the most common service groups used (Table 5.1 and Figure 5.1). While the use of most service groups has remained relatively stable in recent years (Table 5.2 and Figure 5.1), the use of employment services has increased each year. For example, the proportion of service users receiving employment services has increased from 37% of service users in to 42% in , and the number of service users receiving employment services has increased by 48% since The steadying of growth in the number of service users overall (see Section 2) was influenced by declines in the use of some service types. Both accommodation support and community support services decreased by around 3% between and In contrast, the use of community access and employment services increased (by 5% and 4% respectively). For further information on the use of services, see Section 7 and AIHW 2013a: Appendix B, tables B22, B28, B31, B37, B38 B43, B47 B50, B53, B59 B68, B72 and B73. Table 5.1: Service users, service group, by state and territory, Service group NSW Vic Qld WA SA Tas ACT NT Total Accommodation support 10,182 13,649 6,799 3,609 5,150 1, ,421 Community support 36,893 44,744 16,253 13,649 14,337 4,772 4,095 1, ,236 Community access 15,312 24,740 9,505 4,831 6,624 1, ,247 Respite 9,912 15,723 5,203 3,609 1, ,015 Total state/territory services 52,617 76,170 25,477 16,783 19,561 6,463 4,593 2, ,371 Employment 43,482 33,370 27,808 11,345 11,591 3,207 1, ,949 Total (number) 91, ,718 50,406 25,265 28,980 9,243 5,949 3, ,616 Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Totals for Australia may not be the sum of service components because individuals may have used services in more than one state or territory during the 12-month period. 3. Total service users may not be the sum of service group components because individuals may have used more than one service group over the 12-month period. 4. See AIHW 2013a: Appendix B, Table B59 for a breakdown by state and territory of the service types that comprise the service groups. 16

17 Bulletin XX September 2011 Per cent Accommodation support Community support Community access Respite Service group Employment Source: Table 5.2. Figure 5.1: Service users by service group, to (per cent) Table 5.2: Service users, service group, to Service group Percentage change to Percentage change to Accommodation support 37,704 39,169 39,854 42,579 41, Community support 104, , , , , Community access 54,416 58,274 58,632 60,509 63, Respite 31,604 34,331 35,978 36,266 37, Total state/territory services 170, , , , , Employment 89, , , , , Total (number) 246, , , , , Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Total service users may not be the sum of service group components because individuals may have used more than one service group over the 12-month period. 3. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 5.1 Users of multiple services Around 1 in 4 service users (26%) used more than one type of service (AIHW 2013a: Appendix B, Table B64). These could be service types in one service group (for example, within community access) or across service groups (for example, in both accommodation support and community access) (see Section 1). Just over 1 in 5 service users (21%) used services across multiple service groups. Most of those using multiple service groups used two or three different service groups. 17

18 Disability support services: services provided under the National Disability Agreement The most commonly-combined service groups were community support and community access, with 24,767 service users using this combination of services (AIHW 2013a: Appendix B, Table B67). This combination was used by 18% of community support users, and 39% of community access users. Other common combinations were community support with respite, accommodation support with community access and accommodation support with community support services. As might be expected, users with the highest level of need for support in the activities of daily living were much more likely to use multiple service types and to use services across more than one service group than were service users with less-frequent or no need for help (AIHW 2013a: Appendix B, Table B68). The use of multiple service types and service groups was least common among those who used employment services and most common among those who used accommodation, respite or community access service groups (AIHW 2013a: Appendix B, tables B65 and B66). 6 Informal care Informal carers play an important role in the lives of many people with disability. They provide essential support either in place of, or in addition to, NDA-provided services. An informal carer is a person such as a family member, friend or neighbour who provides regular and sustained care and assistance to the person requiring support. This includes people who may receive a pension or benefit associated with their caring role, but does not include people, either paid or voluntary, whose services are arranged by a formal service organisation (see AIHW 2011 for a more detailed definition of informal care and the ways in which definitions are used in various data collections). For further information on service users with an informal carer, see Section 7 and AIHW 2013a: Appendix B, tables B44, B69 B How many service users had an informal carer? In , 133,841 (44%) service users had an informal carer (AIHW 2013a: Appendix B: Table B70). This was an increase of 24% from 108,091 service users with an informal carer in , and of 5% from 127,777 service users with an informal carer in This compares with an increase of 9% between and Since , the proportion of service users with an informal carer has remained relatively steady at between 43% and 44% (AIHW 2013a: Appendix B: Table B70, excluding not stated/not collected ). Not surprisingly, the service users most likely to report having an informal carer were those who used respite services. Users of community support services also reported high levels of informal carer support while users of employment services were least likely to report having an informal carer (Figure 6.1). 18

19 Bulletin XX September 2011 Does not have an informal carer Per cent Has an informal carer Accommodation support Community support Community access Respite 16 Employment Service group Source: AIHW 2013a: Appendix B, Table B72. Figure 6.1: Service users, existence of informal carer by service group, (per cent) 6.2 Who provided informal care? In , most service users with an informal carer (74%) reported that their informal carer was also their primary carer that is, an informal carer who helps with one or more of the activities of daily living: self-care, mobility or communication (AIHW 2013a: Appendix B: Table B78). The majority of service users with an informal carer (73%) reported having a female carer, most often their mother (61%) (AIHW 2013a: Appendix B: tables B73 and B75). In most cases (69% of service users with an informal carer), the informal carer was co-resident with the service user (AIHW 2013a: Appendix B: Table B73). As expected, there is a relationship between living arrangement and service group use. Users of service groups such as respite services and community support were more likely to have a co-resident carer than users of other service groups. About 9% of service users with an informal carer reported that their carer was their spouse; however, as service user age increased, the likelihood of a spouse being identified as a carer also increased (AIHW 2013a: Appendix B, Table B75). Being cared for by a spouse was the most common informal care arrangement for service users aged 65 and over (45%). Most service users with an informal carer (64%) had a carer who was aged under 65 (AIHW 2013a: Appendix B: Table B74). Around 1 in 10 services users with an informal carer (11%) reported having a carer aged 65 and over. Many of these (65%) were the parent of the service user, most often the mother (55%) (AIHW 2013a: Appendix B, Table B76). 19

20 Disability support services: services provided under the National Disability Agreement Profile of a service user by broad primary disability group People using disability support services are diverse and, as such, it is not surprising that their characteristics and use of services vary. As an example of this, some selected characteristics of service users by broad primary disability group are presented in Table 7.1. The broad disability groups presented here are based on the national standard disability groups (AIHW 2013b; see also Section 3). Compared with other service users: service users with an intellectual or learning disability were generally younger; more often male and born in Australia; slightly more likely to be Indigenous; more likely to use accommodation support, community support and respite services; more likely to be employed; and more likely to have an informal carer and to require assistance in the three broad life areas service users with a sensory or speech disability were often older; less likely to be Indigenous; more likely to use community access services; the least likely to use employment services; and generally less likely to have an informal carer or to need assistance in the three broad life areas service users with a psychiatric disability were the least likely to have an informal carer; the most likely to be in the labour force but unemployed; and the most likely to use employment services service users with a physical or diverse disability were the most likely to be born overseas; and the second most likely (after service users with a psychiatric disability) to use employment services (Table 7.1 and Figure 7.1). Per cent 80 Accommodation support Community support Community access Intellectual/learning Physical/diverse Sensory/speech Broad primary disability group Respite Employment Psychiatric Source: Table 7.1. Figure 7.1: Service users, service group by broad primary disability group, (per cent) 20

21 Bulletin XX September 2011 Table 7.1: Selected characteristics of service users by broad primary disability group, Selected characteristics Intellectual/ learning Physical/ diverse Sensory/ speech Psychiatric All service users (a) Service users (number) 128,289 79,731 30,428 56, ,616 Age Sex (%) Percentage change since Percentage change since Mean Median Male Female Indigenous status (%) Indigenous Non-Indigenous English proficiency group (%) Australia Born overseas, EPG Born overseas, EPG Services used (%) Accommodation support Community support Community access Respite Employment Labour force status (%) (b) Employed Unemployed Not in the labour force Has an informal carer? (%) Yes No Always/sometimes need assistance in? (%) (c) Activities of daily living Activities of independent living Activities of work, education and community living (a) All service users includes 22,435 service users for whom primary disability group was not stated/not collected. (b) Service users aged (c) This data item has high rates of not stated/not collected. Percentages based on total including not stated/not collected. Notes 1. Service user data are estimates after use of a statistical linkage key to account for individuals who received services from more than one service type outlet during the 12-month period. 2. Service user data were not collected for all NDA service types. See the appendix to this bulletin for more information (AIHW 2013a). 3. Intellectual/learning includes the categories of intellectual, specific learning/attention Deficit Disorder, autism, and developmental delay ; physical/ diverse includes the categories of physical, acquired brain injury, and neurological ; sensory/speech includes the categories of deaf-blind, vision, hearing and speech. See AIHW 2013a and 2013b for more information. 21

22 Disability support services: services provided under the National Disability Agreement Acknowledgments This bulletin and additional tables were prepared by Felicity Murdoch, Brendan Brady and Paul Quach of the Functioning and Disability Unit of the Australian Institute of Health and Welfare. The contributions of Pamela Kinnear (Continuing and Specialised Care Group Head) and Liz Clout (Functioning and Disability Unit Head) are gratefully acknowledged. The successful completion of the Disability Services National Minimum Data Set collection in owes much to the service users and service providers who contributed information, and to staff of the Australian Government and state and territory government agencies who undertook the collection and commented on the bulletin. Abbreviations ABS ADD ADL AIHW AIL AWEC DS NMDS NDA SCRGSP Australian Bureau of Statistics attention deficit disorder activities of daily living Australian Institute of Health and Welfare activities of independent living activities of work, education and community living Disability Services National Minimum Data Set National Disability Agreement Steering Committee for the Review of Government Service Provision Symbols nil or rounded to zero.. not applicable 22

23 Bulletin XX September 2011 References ABS (Australian Bureau of Statistics) 2012a. Australian demographic statistics, June quarter ABS cat. no Canberra: ABS. ABS 2012b. Migration, Australia, ABS cat. no Canberra: ABS. AIHW (Australian Institute of Health and Welfare) Australia s welfare Australia s welfare series no. 10. Cat. no. AUS 142. Canberra: AIHW. AIHW 2013a. Disability support services: Appendix Cat. no. AUS 173. Canberra: AIHW. AIHW 2013b. METeOR (Metadata Online Registry). Person primary disability group, NDA code N[N]. Canberra: AIHW. Viewed 28 May 2013, < content/index.phtml/itemid/511282>. SCRGSP (Steering Committee for the Review of Government Service Provision) Report on government services Canberra: Productivity Commission. Related publications This bulletin is part of an annual series of reports. The earlier editions and any published subsequently can be downloaded for free from the AIHW website < au/disability-publications/>. The website also includes information on ordering printed copies. Additional tables and technical information relating to this bulletin are published separately online as Disability support services: Appendix (AIHW 2013a). The following AIHW publications relating to disability might also be of interest: AIHW Changes in life expectancy and disability in Australia 1998 to Bulletin no Cat. no. AUS 166. Canberra: AIHW. AIHW Incontinence in Australia: prevalence, experience and cost Bulletin no Cat. no. AUS 167. Canberra: AIHW. AIHW Incontinence in Australia. Cat. no. DIS 61. Canberra: AIHW. 23

24 The Australian Institute of Health and Welfare is a major national agency which provides reliable, regular and relevant information and statistics on Australia s health and welfare. The Institute s mission is authoritative information and statistics to promote better health and wellbeing. Australian Institute of Health and Welfare 2013 This product, excluding the AIHW logo, Commonwealth Coat of Arms and any material owned by a third party or protected by a trademark, has been released under a Creative Commons BY 3.0 (CC BY 3.0) licence. Excluded material owned by third parties may include, for example, design and layout, images obtained under licence from third parties and signatures. We have made all reasonable efforts to identify and label material owned by third parties. You may distribute, remix and build upon this work. However, you must attribute the AIHW as the copyright holder of the work in compliance with our attribution policy available at < The full terms and conditions of this licence are available at < Enquiries relating to copyright should be addressed to the Head of the Communications, Media and Marketing Unit, Australian Institute of Health and Welfare, GPO Box 570, Canberra ACT This publication is part of the Australian Institute of Health and Welfare s bulletin series. A complete list of the Institute s publications is available from the Institute s website < ISBN Suggested citation Australian Institute of Health and Welfare Disability support services: services provided under the National Disability Agreement Bulletin no Cat. no. AUS 173. Canberra: AIHW. Australian Institute of Health and Welfare Board Chair Dr Andrew Refshauge Director David Kalisch Any enquiries about or comments on this publication should be directed to: Communications, Media and Marketing Unit Australian Institute of Health and Welfare GPO Box 570 Canberra ACT 2601 Tel: (02) info@aihw.gov.au Published by the Australian Institute of Health and Welfare Please note that there is the potential for minor revisions of data in this report. Please check the online version at < for any amendments.